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Tampa Tribune: Aly Rusciano: My Life with Juvenile Arthritis and step therapy

I was diagnosed with Juvenile Idiopathic Arthritis (JA) when I was 13 years old, and ever since then my life has changed.

I used to be extremely active and loved anything that revolved around the outdoors. But because of my arthritis, I can’t do much of that anymore. My arthritis is so bad that most of the time I have to rely on a wheelchair to get me around.

I’m 16 now, and instead of focusing on the things that most teenagers think about, like hair or makeup or where to hang out after school, I have to constantly think about how to pace myself every day. It’s a balancing act. If I want to go to school for a little longer one day, I have to give something else up to conserve my energy. My arthritis keeps me from participating in high school clubs and hanging out with my friends whenever I want.

JA has also affected me socially. Unlike most girls my age, I can’t go to the mall on a regular basis or hang out with friends as much as I would like. I have had to miss so many birthdays, dances and fun amusement park trips. Because of this, I have lost many friendships and relationships I cherished. This is starting to become harder to handle because I’m getting older, and having a “normal” social rating is more and more important in social groups. No one wants to hang out with the girl in the wheelchair who gets tired too easily and doesn’t act “normally.”

Going to school is very difficult, and I miss much more than I attend. My main goal is to be able to graduate, and I’m lucky to have a teacher come to my house when I miss school so I don’t get too far behind. I’m staying on track as best I can because one day I would like to go to college and graduate with a degree in journalism. I have always loved writing, and I learned about journalism when I was in middle school. Whether I work on a newspaper, the news, in the entertainment industry or on my own as an author, I’m looking forward to a future of writing.

All of these plans keep me focused on the future, but since my diagnoses, I have developed a new perspective on life. You have to live in the moment and be thankful for what you have, because you don’t know when all of that might change.

I first learned about step therapy when I began the treatment process for my arthritis a few years ago. My insurance company would only approve treatments in a certain order, like steps up a ladder.

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